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The Time It Takes to Live With Chronic Illness

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I want others to realize the amount of time it takes to manage a chronic condition. When people ask me how they can help, I want them to give me my time back. Obviously I know you cannot physically wrap up time, put it in a box and give to it me, but I do have some suggestions that can make it seem like you have done just that. First, let me explain how much time illness takes from me.

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First, there is the time I spend engaging in actual medical care. For example, every two weeks I travel 20 minutes to an infusion center from my place of employment. It takes about 15 minutes to park and walk in. Another hour is spent getting an IV started (my veins are tough to stick from the dehydration I try to treat with the IV treatment). Once the IV is in, it takes two hours for a liter of saline fluid to infuse. Another 5 minutes and I’m walking back to my car. It takes me about 60 minutes to drive home from the center. This sucks almost 5 hours out of my day every two weeks. I have to do this after work because I work for the most unaccommodating employer that ever existed.

On top of all that, I do another infusion at home every 3 weeks that takes about 5 hours as well and must occur on a Friday because it leaves me feeling as if I have the flu for 48-72 hours. Then I take meds six times per day (when I remember all of them). Let’s say time spent attempting to swallow pills is 30 minutes per day.

The time spent seeking medical advice and treatment is probably the most frustrating type of time to lose to illness. There is no guarantee that this time will reap any rewards, and it’s the most likely type of time to leave me crying. In the past four months I have had an average of two specialty doctor visits per month. These doctors have ordered about 20 hours’ worth of testing (CT scans, MRAs, MRIs, blood tests etc.). Time spent in waiting rooms averages 30 minutes, time spent with doctors’ averages 10 minutes, and time spent calling to get test results averages 2 hours. Seriously. Let’s just assume I spent 3 hours and 20 minutes per week with visits. Let’s also assume this led to an average of 60 minutes of crying per week as well; yup, that’s a truth.

I spend a lot of time on the phone with my insurance company. Since I can’t mentally handle typing out all the reasons for this horrible fact, you’ll have to trust me that an average of 2 hours per week is accurate. I spend another 30 minutes per week refilling medications and/or attempting to refill medications.

A minimum of time lost to chronic illness on a good week could be about 7 hours and 20 minutes. On a busy week I may spend about 17 hours and 20 minutes on being sick plus 48-72 hours recovering from being sick.

How can someone else help? Well, I work about 50 hours per week and spend about 15 hours commuting to and from work. Let’s just average things out to the fact that I spend 80 hours per week (at least 2 weeks per month) on a combination of work, commuting and medical care. I’m a hamster on a wheel here. If I didn’t have to work so much, I wouldn’t need to spend some much time outside of work caring for myself. But I need health insurance, so I need to work, and I need to keep my current job because I can’t risk losing my access to protections like FMLA because I won’t make it another year without missing work to care for myself.

How can you give me time back? Come with me. Meet me at the infusion center. Make that 5 hour stint partly a social visit. Come by on a Friday night and keep me company while I’m hooked up to the other infusion. Call me after a doctor’s appointment so that I can at least cry on the phone to someone instead of crying in the car on the way home while Mariah Carey tells me they can’t take that away from me. Help me problem solve my schedule and work around my many appointments to schedule in leisure time. Help me find silly crafts to do or movies to watch on the days I’m stuck hooked up to something and can’t leave the house.

It can be incredibly lonely to be sick because of how much time you spend alone at doctor’s offices, alone at the pharmacy, alone having a procedure, alone making phone calls. I don’t need you to hold my hand, but I do need you to help me get my time back.

Getty image by Dutch Scenery.

Originally published: January 7, 2019
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